Let’s Find Another, Better Way. And Soon.

Launching a rocket at Ford Heritage Park, September 2010, with our friends, Darrin and Carson O'Connell. May there be many more rocket launches in our future! Photo by Amy Rauch Neilson.

I felt pretty horrible physically yesterday. And several hours of that eventually wears you down mentally, too.

I told you. I’m not perfect. So far from.

Thursday and Friday of this week were Theo’s Winter Break from school. I’ve always loved his days off, because we fill them with the most wonderful adventures, whether it’s an official outing to the Ann Arbor Hands-On Museum, the Detroit Science Center, the Detroit Zoo (we never get past the Amphibian House), or, when the weather is nice, we’ll take a trip to the Nature Center at our local Metro Park, ride our bikes, play in sandbox, hunt for bugs, frogs and toads, race each other all over his favorite playscape at Ypsilanti’s Ford Heritage Park. (I’m so not one of those parents who sits on the park bench, watching from afar.)

But yesterday, I was too sick to do any of that. I missed out on some of his life the first go-round, Stage 1 in 2006, when Theo was just six months old. I try never to dwell on what I missed out on back then — being in surgery or sick from chemotherapy instead of with him, or restricted to lifting no more than five pounds for weeks at a time, which translated into not being able to lift my own baby.

I’ve long since moved on, accepted what was, truly grateful to be alive for the here and now. What made it easier to do that was knowing that that part of my life was done and over with; I was “cured.” Don’t look back — look forward, I’d tell myself. Look toward the future at all that is yet to be: Theo’s first day of school, DisneyWorld, family days, reading a book together before bed.

So, yesterday was a disappointment because I felt crummy from Tuesday’s chemotherapy treatments and instead of being able to plan wonderful Mommy-Theo Days (that’s what we call them at our house) for Theo’s Winter Break, I was achey and nauseous, too tired to be able to do what I truly wanted to do — spend the day with my kid.

Last evening, we were all sitting on the couch together when the waterworks began.

“I hate this,” I told Don. “I hate feeling this way. I hate having to go through chemo again.”

What I detest most about this second time around is that I’m not sure where the finish line is. Neither are my doctors.

How much chemo and for how long? No one can be sure.

On Monday, I met with a member of my oncologist’s team, Cynthia Kresge. She had quite a bit of good news, for which I am most grateful. She listened to my lungs and they sound clear. I was coughing a lot when I was first diagnosed, and no one was sure whether it was from the spots of cancer in my lungs — the biggest of which is the size of a blueberry in my right lung — or from the irritation of the lung biopsy itself. Whatever it was, it’s gone now. Praise the Lord for that.

Also, the lump in my left breast — the one that ridiculously formed between my implant and fake (reconstructed) nipple — seems to be shrinking. This is super-duper news.

Though we won’t have a “picture” of the battle’s progress for a few weeks yet (I’ll likely be scanned after I complete Round 3 of chemo), we do have some physical evidence that these treatments are already hard at work. Yay, God!

What’s difficult for me is that Cindy told me chemo may indeed be my lifestyle — long term. Like a forever thing, until breast cancer treatment advances to the point where there’s something better. That’s because, as a Stage 4 breast cancer, I will never be “cured,” at least, not in the current realm of scientific possibility. So, even when the body scans come back “clean,” there will be cancer cells lurking in my body. We will need to keep them at bay. Chemo is the way.

The thought of feeling like I have the flu for two or three days, two weeks on, one week off, indefinitely, well, yes, that was enough to make me cry last night. Sob, if you must know.

Even so, I am still grateful. Because given the alternative, I’ll do what I have to do. If two weeks on, one week off, indefinitely, is the path I must travel, I will do it. I will do it because I want to be here for my husband and my son. I will do it because I love life and want to stay on this planet for as long as possible. I will cherish all of the good days when I’m feeling well, and deal with the bad days as they come.

I’m just praying hard that another way to manage this disease, a better way, shows up. And very soon.

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15 responses

Amy, I remember reading that your publisher or someone had wanted your writing to touch many people even those without cancer. I am living proof that this is true. I don’t have cancer. I suffered two strokes in 2010 at the age of 50 and felt I had been dealt a poor hand. They don’t know why. All tests come back negative so I just don’t know if another stroke might happen any day. After reading your post today it reminded me, I want to live on this earth as well. Whatever it takes, I will do it. Take any tests you want. Give me any medicine I need to try, I will be a good little doobie as I want to be here to enjoy each and every day. Thank you for reminding me I am not the only person fighting some type of struggle. Bless you for your battle and kiss that precious child.

I am so amazed and grateful that there are people out there who feel a strong interest in doing research and development for medical problems. I often wonder what it is that makes them go into that line of work, absolutely fascinating. Very innovative and blessed people.
Chemo is part of your lifestyle. But when I think of you I don’t think “chemo,” I think “always on the go!” Is there hope that over time, your body will not feel strong side effects anymore, a sort of getting used to the routine? I hope so, and I will pray that you remain emotionally strong as well.

Amy, count me with Cindy as someone you’re helping. I’m still struggling to accept that my son will never be “all better”. Although a transplant is 80% likely to cure PSC, the autoimmune disease destroying his liver, and even if the Crohn’s disease stays in remission, his health will never be 100% . But it will be good enough, as yours will be.

Everyone has clouds on their horizons. Some people just don’t see theirs yet.

Sorrier still that there isn’t yet a finish line for you and chemo. That’s what kept me going the finish was a 2 week trip to Hawaii. I ended up spending most of my 2 weeks in the hospital with a ruptured bowel but that’s a story for another day.

Im sorry you had a rough night. Hopefully, and I know you did, find comfort with your wonderful husband and child. I know how desperately you are not only fighting the fight for yourself, but for them. You are allowed to have a bad day…you don’t have to try and always be so strong. During those weakest moments, let those that love you take care of you and comfort you. Tomorrow you’ll be pulling Theo over the ice on his sled praising the day!

Just keep on keepin’ on! There will be those stinky days, but throughout them remember that you have lots of folks out here sending warm wishes of comfort and love and healing your way. Just wrap yourself up in our virtual hugs!

From another survivor, seconding the reply from pinkfund. Another great book is- Anti Cancer A New Way of Life by David Servan-Schreiber, MD

Was glad to hear how many your blog is reaching now, truly amazing, I’m betting you’ll make that 5,000 mark on time. I know how lonely chemo can be, even with all the support in the world-which you have!

Amy, I love your strong will to live for yourself, for Don and for Theo. But for us, your family, too. I love you and pray daily for strength and joy to be yours. My church is praying for you too. I hope you don’t mind that I asked them to pray, too. Love, Aunt Doris

Hi Amy, I am so grateful for your fighting spirit. I pray daily for you and for Don and Theo, as well. I love you all. I have asked my church to pray for you as well. I hope you don’t mind that. God grant you peace, joy and health! love, Aunt Doris

Amy, you are such an inspiration to so many people. And, after all, isn’t that how we should all live our lives- being grateful for the things we do have and can control. Cherish those things, love those things, and always, always be grateful. Thank you for sharing so much of yourself with all of us.

Amy…. I pray the same thing for you!!! Thank you for being a pioneer, and for demonstrating such strength, and for sharing it all as you go along. You have so many people lifting you and your family up in prayer. God Bless!